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NeedCourage

Active member
Joined
Feb 22, 2014
Messages
73
Reason
Lost a loved one
Diagnosis
12/2013
Country
US
State
PA
City
SW
Hello to all who happen to read this.

We went to our second ALS Clinic in Pittsburgh PA today. Once again there was no respiratory therapist present. argh. I had called several times to ensure that one would be present to check T's breathing levels since we are going to Cleveland a week from tomorrow for an all day assessment of his ability to handle a Diaphragm Pacer System.

We will be meeting with Dr. Onders, one of the originators of the DPS so I know we will be in good hands.

T's breathing has taken a turn for the worse since our last Clinic visit 3 months ago... Although thin, his little body still has good muscles and no paralysis nor trouble eating or swallowing other than appetite challenges.

When I had a moment alone with our Neurologist, I finally got up the nerve to ask: "

What is my sweetheart's prognosis?"

Knowing how well some people respond to the DPS and that a good quality of life can be extended for 15 or more months... some say longer. - I was shocked to hear him say, "Well his respiratory problems are 'dicey' so I would say a year and then we will put him in hospice."

OMG>:shock::shock::shock::shock: OMG!

We were just diagnosed this past Spring '14 - and I had read 2-5 years.... looks like that may not be so.

Don't have a special question - just needed to reach out and .... hear whatever anyone may have to say. I don't know what to think - can't think.... Guess I was in a bit of denial even tho' I'm basically a realist. (I did not tell my husband...)

I feel lost. Wanna have a good stiff drink and a pack of smokes! (darn = why did I give up all my favorite things over the years?). May have to start both again to get through this.

ok - enough. thanks if you read this.

xoxox - Nancy
 
I am sorry. Very tough day!
I am sure your neurologist was giving his best and expert opinion. And likely he has seen a lot. But none of us know how our progression will go the old saying is " start fast, finish fast" but not everyone follows that path. Some have periods where they stabilize for a bit. All we can do is take each day and even while planning ahead do not dwell on what is to come. Live each day because anything can happen tomorrow.
Very best of luck with Dr Onders. I hope you find he is a candidate for DPS. Even though there was no RT they must have been able to do testing with the handhelds? Did you get any numbers?

Whatever happens you know that the members here will be here for both of you

Big hug!
 
Nancy..I'm sorry...but remember..there's no experiation date stamped on his foot. It's just the doctors educated guess...but a guess nevertheless .
 
Nikki - NO numbers whatsoever! But I did call Cleveland when I got home and spoke with one of Dr. Onder's assistants and she said - don't worry - we treat every person as an individual and nothing is etched in stone as far as guidelines. They are very nice there ! Thanks, lovely lady, for answering so quickly.... I'm very appreciative and admire you in many ways...
Nancy :wink:
 
Nancy, Nikki is right on. We have no set progression. I hope the dps works out and helps.

>Did you get any numbers?

like fvc? liters or %?



Max - Thursday, November 06, 2014 4:30:19 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
Oh I LOVE your avatar! soooo adorable.... Thanks so much - you are right, of course. I MUST remain positive... PS I lived in New Hampshire for 10 years and miss it... great place to be. : )) Nancy
 
Nikki - I wrote a long answer and it's lost in cyberland.... boo hoo.
Thanks Max - you are always a great presence here - thanks for your thoughts.
: ))
 
NO NUMBERS - NO TESTS! frustrating esp since he is respiratory onset! dang.
 
My granddaughter drew my avatar. It's me:) haha. And I lived in pa for nine years. My husband is from pa:)
 
Well then we are already friends...let's make it official... ok? oh goodie....
 
I'm so sorry Nancy to hear the bad news. But, nobody knows for sure when their time will be up. We all just need to make the most of each day. I know easier said then done. My mom unfortunately did pass away 17 years ago of colon cancer. She loved to go to Las Vegas and it was her wish to get through chemo and to be strong enough to just make it back for just one more visit. She got her wish and actually made it for three more trips. We are all hear for you Nancy. Hugs, Kim
 
That seems like a 'definite' number for an indefinite issue ... as he estimated this based on breathing a fair question would be 'how much longer if we use BiPAP?' or vent.

But that would better be addressed to a Pulmonologist...
 
If all else is well and not progressing and breathing is the only issue, I would go with trach and vent. It is not that difficult to manage. With mom, I do not even think about the vent when I am with her. Makes suctioning so much easier! However in our case, mom is bedridden and the trach was probably a mistake as it has greatly altered her end-of-life plans and I am now having to move in with her until we can find reliable help as no nursing facility in WV will take vents.
 
vzandt is right. No one has a expiration date stamped on their forehead. My dad is fighting stage 4 pancreatic cancer and was told 6-12 months tops, well it has been nearly 18 months and he is still here and still doing chemo. If fact the tumor is gone.

Hope, determination and stubbornness and positive attitude goes a long way. Sending prayers and hugs to you.
 
Thank you vickim. Your words are comforting and kind. And all prayers and hugs GRATEFULLY accepted! with love, Nancy.

and gilwest - a trach is not an option for my husband for several reasons but I sincerely wish you success in finding all that you need for your mom's well being. xo

GregK - good points! Husband is on bipap and will continue with it while using DPS.
 
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